A Systematic Analysis of Transition Readiness Assessment Tools Used for Adolescents with Chronic Health Problems

Yıl 2024, , 891 - 902, 01.12.2024

Evrim Kızıler , Dilek Yıldız

https://doi.org/10.38108/ouhcd.1252672

Öz

Objective: Efforts to ensure an effective and smooth transition from pediatric care to adult services are increasing worldwide. However the World Health Organization (WHO) reports that the transition policies and practices are still not at the desired level. For an effective transition, it’s recommended that adolescents' transition readiness be evaluated throughout the transition period. This study was conducted to examine the transition readiness assessment tools used for adolescents with chronic health problems and to raise awareness about the transition process.
Methods: The study population was determined by searching CINAHL, Ovid aMedline, PubMed, and Google Scholar databases between June and November 2021 using the keywords "adolescent", "transition from pediatrics to adult care," and "evaluation of readiness for transition."
Results: The search resulted in, 12 assessment tools., most of which focused on adolescent disease knowledge, drug management, communication with health professionals, and self-management as criteria for transition readiness in 39 studies. Seven of these were used in all chronic diseases and five were developed for kidney diseases, sickle cell anemia, epilepsy, psychiatric diseases and AIDS.
Conclusion: Considering the strengths and weaknesses of the determined scales, it was determined that the most preferred tool was the TRAQ 5.0since it is based on a theory and can be used in all chronic diseases. However, there is still a need for tools created on the basis of a certain theory, which can be easily used in patients under the age of 16, and enable the participation of more than one stakeholder (adolescents, parents, professionals).

Anahtar Kelimeler

Adolescent, Choronic diseases, Transition readiness, Systematic review

Kronik Sağlık Sorunları Olan Adölesanlarda Kullanılan Geçişe Hazır Oluşu Değerlendirme Araçlarının Sistematik İncelenmesi

Öz

Amaç: Tüm dünyada kronik sağlık sorunları olan adölesanların pediatrik bakımdan erişkin servislere etkili ve sorunsuz geçiş çabaları artmakla birlikte Dünya Sağlık Örgütü (DSÖ) uygulanan geçiş politika ve uygulamalarının henüz istenilen düzeyde olmadığını bildirmektedir. Sorunsuz bir geçiş için adölesanların geçişe hazır oluş durumunun 14 yaş itibariyle sık sık değerlendirilmesi önerilmektedir. Bu çalışma, kronik sağlık sorunları olan adölesanların erişkin servislere geçişe hazır oluşunu değerlendirmede kullanılan araçların incelenmesi ve ülkemizde geçiş sürecine yönelik farkındalığın artırılması amacıyla yapılmıştır.
Yöntem: Çalışmanın evrenini Haziran-Kasım 2021 tarihleri arasında “adölesan", “pediatriden erişkin bakıma geçiş” ve "geçişe hazır oluşu değerlendirme” anahtar kelime kullanılarak CINAHL, Ovid medline, PubMed ve Google Scholar veri tabanlarının taranması ile elde edilen çalışmalar oluşturmuştur.
Bulgular: Araştırma sonucunda dahil edilme kriterlerini karşılayan 39 çalışmada geçişe hazır oluş kriterleri olarak çoğu adolesan hastalığı bilgisi, ilaç yönetimi, sağlık profesyonelleri ile iletişim ve özyönetim üzerine odaklanan 12 değerlendirme aracı bulunmuştur. Bu araçlardan yedisi tüm kronik hastalıklarda, beşi ise böbrek hastalıkları, orak hücreli anemi, epilepsi, psikiyatrik hastalıklar ve AIDS gibi belli bir hastalık grubuna özgü geliştirilmiştir. Belirlenen ölçeklerin güçlü ve zayıf yönleri göz önüne alındığında, bir kurama dayanması ve tüm kronik hastalıklarda kullanılabilmesi nedeniyle en fazla tercih edilen aracın Geçişe Hazır Oluşu Değerlendirme Ölçeği (TRAQ 5.0) olduğu saptanmıştır.
Sonuç: Halen belli bir teori temelinde oluşturulan, 16 yaşın altındaki hastalarda rahatlıkla kullanılabilen ve birden fazla paydaşın (adölesanlar, ebeveynler, sağlık profesyonelleri) katılımını sağlayan araçlara ihtiyaç bulunmaktadır.

Anahtar Kelimeler

Adölesan, Kronik hastalık, Geçişe hazır oluş, Sistematik derleme

Kaynakça

• Anelli CG, Len CA, Terreri MTRA, Russo GCS, Reiff AO. (2019).Translation and validation of the Transition Readiness Assessment Questionnaire (TRAQ). Journal de Pediatria, 95(2), 180-187. DOI: https://doi.org/10.1016/j.jped.2017.12.013
• Benson ND, Cunningham C, Braun L, Wallace J, Stewart K, Derouin A. (2018).Transitioning pediatric patients to adult health care: a quality ımprovement needs assessment. Journal of Pediatric Health Care, 32(3), 216-222. https://doi.org/10.1016/j.pedhc.2017.09.01 4
• Cantú-Quintanilla G, Ferris M, Otero A, Gutierez-Almaraz A, Valverde-Rosas S, Velazquez- Jones L, ve ark. (2015). Validation of the UNC TRxANSITION Scale Version 3 Among Mexican Adolescents With Chronic Kidney Disease. Journal of Pediatric Nursing, 30(5), 71-81. https://doi.org/ 10.1016/j.pedn.2015.06.011.
• Chapados P, Aramideh J, Lamore K, Dumont E, Lugasi T, Clermont MJ, ve ark. (2021). Getting ready for transition to adult care: Tool validation and multi-informant strategy using the Transition Readiness Assessment Questionnaire in pediatrics. Child: care, health and development, 47(5),645-653. https://doi.org/10.1016/j.pedn.2015.06.011
• Clark SJ, Beimer NJ, Gebremariam A, Fletcher L, Patel A, Carbone L, ve ark. (2020). Validation of EpiTRAQ, a transition readiness assessment tool for adolescents and young adults with epilepsy. Epilepsia Open, 5(3), 487-495. https://doi.org/10.1002/epi4.12427 Cohen SE, Hooper SR, Javalkar K, Haberman C, Fenton N, Lai H, ve ark. (2015). Self-Management and transition readiness assessment: concurrent, predictive and discriminant validation of the STARx Questionnaire. Journal of Pediatric Nursing, 30(5), 668-676. https://doi.org/10.1016/j.pedn.2015.05.006
• Culen C, Herle M, Ertl DA, Fröhlich-Reiterer E, Blümel P, Wagner G, ve ark. (2020). Less ready for adulthood?—Turner syndrome has an impact on transition readiness. Clinical Endocrinology, 93(4), 449-455. https://doi.org/10.1111/cen.14293
• Ekim A, Kolay M, Ocakcı AF. (2018). Readiness for transition from pediatric to adult care for adolescents with chronic heart disease. Journal for Specialists in Pediatric Nursing, 23(1), e12199. https://doi.org/ 10.1111/jspn.12199
• Ferris M, Cohen S, Haberman C, Javalkar K, Massengill S, Mahan JD, ve ark. (2015) Self-Management and transition readiness assessment: development, reliability, and factor structure of the starx questionnaire. Journal of Pediatric Nursing, 30(5), 691-699. https://doi.org/10.1016/j.pedn.2015.05.009
• Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, Hogan SL, ve ark. (2012).A clinical tool to measure the components of health-care transition from pediatric care to adult care: The UNC TRxANSITION scale. Renal Failure, 34(6), 744-753. https://doi.org/10.3109/0886022X.2012.678171
• Gilleland J, Amaral S, Mee L, Blount R. (2012). Getting ready to leave: Transition readiness in adolescent kidney transplant recipients. Journal of Pediatric Psychology, 37(1), 85-96. https://doi.org/10. 1093/jpepsy/jsr049
• González F, Roizen M, Rodríguez Celin MDLM, Cunto CD, Eymann A, Roberto M, et al. (2017). Validation of the Argentinian Spanish version of the transition readiness assessment questionnaire for adolescents with chronic conditions. Archivos Argentinos de Pediatría, 115(1), 18-27. http://doi.org/ 10.5546/aap.2017.eng.18
• Gumidyala AP, Greenley RN, Plevinsky JM, Poulopoulos N, Cabrera J, Lerner D, ve ark. (2018). Moving on: Transition readiness in adolescents and young adults with IBD. Inflammatory Bowel Diseases, 24(3), 482-489. https://doi.org/10.1093 /ibd/izx051
• Hart LC, Ferris DGDM, Nazareth M, Faldowski R, Rak E, Hooper S, ve ark. (2021). Evaluation of the TRxANSITION Index–Parent Version for assessment of readiness to transition to adult care among youth with chronic conditions. Journal of Pediatric Nursing, 58, 1-8. https://doi.org/10.1016/j.pedn.2020.08.010
• Hart LC, Pollock M, Hill S, Maslow G. (2017). Association of transition readiness to ıntentional self-regulation and hopeful future expectations in youth with ıllness. Academic Pediatrics, 17(4), 450-455. https://doi.org/10.1016/j.acap.2016.12.004
• Huang JS, Terrones L, Tompane T, Dillon L, Pian M, Gottschalk M, ve ark. (2014). Preparing adolescents with chronic disease for transition to adult care: A technology program. Pediatrics, 133(6), 1639-1646. https://doi.org/10.1542/peds.2013-2830
• Ishida Y, Tezuka M, Hayashi M, Inoue F. (2017). Japanese childhood cancer survivors’ readiness for care as adults: a cross-sectional survey using the Transition Scales. Psychooncology, 26(7), 1019-1026. https://doi.org/10.1002/pon.4276
• Javalkar K, Johnson M, Kshirsagar A V., Ocegueda S, Detwiler RK, Ferris M. (2016). Ecological factors predict transition readiness/self-management in youth with chronic conditions. The Journal of Adolescent Health.,58(1), 40-46. https://doi.org/10.1016/j. jadohealth.2015.09.013
• Jensen PT, Paul G V., LaCount S, Peng J, Spencer CH, Higgins G, ve ark. (2017). Assessment of transition readiness in adolescents and young adults with chronic health conditions. Pediatric rheumatology online journal, 38, 778-6. https://doi.org/10.1186 /s12969-017-0197-6
• Johnson K, McBee M, Reiss J, Livingood W, Wood D. (2021). TRAQ changes: Improving the measurement of transition readiness by the Transition Readiness Assessment Questionnaire. Journal of Pediatric Nursing, 59, 188-195. https://doi.org/10.1016/j.pedn. 2021.04.019
• Klassen AF, Grant C, Barr R, Brill H, Camargo OKD, Ronen GM, ve ark. (2015). Development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: The TRANSITION-Q. Child: Care Health and Development, 41(4), 547-558. https://doi.org/ 10.1111/cch.12207
• Klassen AF, Rosenberg-Yunger ZRS, D’Agostino NM, Cano SJ, Barr R, Syed I, ve ark. (2015). The development of scales to measure childhood cancer survivors’ readiness for transition to long-term follow-up care as adults. Health Expect, 8(6), 1941-1955. https://doi.org/10.1111/hex.12241
• Kızıler E, Yıldız D, Eren Fidancı B. (2018). Validation of transition readiness assessment questionaire in Turkish adolescents with diabetes. Balkan Medical Journal, 35(1), 93-100. https://doi.org/10.4274/balkanmedj .2016.1415
• Kittivisuit S, Lerkvaleekul B, Soponkanaporn S, Ngamjanyaporn P, Vilaiyuk S. (2021). Assessment of transition readiness in adolescents in Thailand with rheumatic diseases: a cross-sectional study. Pediatric Rheumatology, 19(1) 101.
• McColl J, Semalulu T, Beattie KA, Alam A, Thomas S, Herrington J, ve ark. (2021). Transition readiness in adolescents with juvenile ıdiopathic arthritis and childhood‐onset systemic lupus erythematosus. ACR Open Rheumatology, 3(4), 260-265. https://doi.org/ 10.1002/acr2.11237
• Mellerio H, Jacquin P, Trelles N, Rous EL, Balenger R, Alberti C, ve ark. (2020).Validation of the “Good2Go”: the first French-language transition readiness questionnaire. European Journal of Pediatrics, 179(1), 61-71. https://doi.org/10.1007 /s00431-019-03450-4
• Nazareth M, Hart L, Ferris M, Rak E, Hooper S, van Tilburg MAL. (2018). A parental report of youth transition readiness: the parent STARx Questionnaire (STARx-P) and Re-evaluation of the STARx Child Report. Journal of Pediatric Nursing, 38, 122-126. https://doi.org/10.1016/j.pedn.2017 .08.033
• Oberoi AR, Patterson A, Sobota A. (2022). Measuring transition readiness in adolescents and young adults with sickle cell disease using the transition readiness assessment questionnaire. Pediatrin Blood and Cancer., 69(2), e29417. https://doi.org/10.1002/pbc. 29417
• Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffman TC, Mulrow CD, ve ark. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372,n71. https://doi.org/ 10.1136/bmj.n71
• Rea KE, Cushman GK, Quast LF, Stolz MG, Mee LL, George R, ve ark. (2021). Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives. Patient Education and Counselling, 104(8), 2089-2097. https://doi.org/10.1016/j.pec.2021.01.027
• Santosh P, Singh J, Adams L, Mastroianni M, Heaney N, Lievesley K, et al. (2020). Validation of the Transition Readiness and Appropriateness Measure (TRAM) for the Managing the Link and Strengthening Transition from Child to Adult Mental Healthcare in Europe (MILESTONE) study. BMJ Open., 10(6), e033324. http://dx.doi.org/10.1136/ bmjopen-2019-033324
• Sheanon NM, Beal SJ, Kichler JC, Casnellie L, Backeljauw P, Corathers S. (2020). Readiness for transition to adult care in adolescents and young adults with Turner syndrome. Journal of Pediatric Endocrinology and Metabolism, 33(9), 1165-1171. https://doi.org/10.1515/jpem-2020-0155
• Speller-Brown B, Patterson Kelly K, VanGraafeiland B, Feetham S, Sill A, Darbari D, et al. (2015). Measuring transition readiness: a correlational study of perceptions of parent and adolescents and young adults with sickle cell disease. Journal of Pediatric Nursing, 30(5), 788-796. https://doi.org/10.1016/ j.pedn.2015.06.008
• Stephens SB, Raphael JL, Zimmerman CT, Garşand BH, Guzman MMD, Walsh SM,et al. (2021). The utility of self-determination theory in predicting transition readiness in adolescents with special healthcare needs. The Journal of Adolescent Health, 69(4), 653-659. https://doi.org/10.1016/j.jadohealth .2021.04.004
• Sönmez HE, Koç R, Karadağ ŞG, Aktay Ayaz N. (2021). The readiness of pediatric rheumatology patients and their parents to transition to adult-oriented treatment. International Journal of Rheumatic Diseases., 24(3), 397-401. https://doi.org/10.1111/1756-185X.14050
• Torun T, Çavuşoğlu H, Doğru D, Özçelik U, Ademhan Tural D. (2021). The Effect of self-efficacy, social support and quality of life on readiness for transition to adult care among adolescents with cystic fibrosis in Turkey. Journal of Pediatric Nursing, 57:e79-e84. https://doi.org/10.1016/j.pedn .2020.11.013
• Treadwell M, Johnson S, Sisler I, Bitsko M, Gildengorin G, Medina R, et al. 2016). Development of a sickle cell disease readiness for transition assessment. International Journal of Adolescent Medicine and Health, 28(2), 193-201. https://doi.org/10.1515/ ijamh-2015-0010
• Wood D, Rocque B, Hopson B, Barnes K, Johnson KR. (2019). Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida. Journal of Pediatric Rehabilitation Medicine, 12(4), 405-413. https://doi.org/10.3233/PRM-180595.
• Wood DL, Sawicki GS, Miller MD, Smotherman C, Lukens-Bull K, Livingood WC,et al. (2014). The Transition Readiness Assessment Questionnaire (TRAQ): Its factor structure, reliability, and validity. Academic Pediatrics,14(4), 415-422. https://doi.org/ 10.1016/j.acap.2014.03.008
• Zanoni BC, Archary M, Sibaya T, Sibaya T, Musinguzi N, Kelley M, ve ark. (2021). Development and validation of the HIV adolescent readiness for transition scale (HARTS) in South Africa. Journal of International AIDS Society, 24(7), e25767. https://doi.org/10.1002/jia2.25767